Implementation of European standards of care for cystic fibrosis — provision of care
Received 4 November 2008; received in revised form 26 April 2009; accepted 11 May 2009.
Abstract
Background
Several guidelines for cystic fibrosis (CF) caregivers exist, but information about their implementation is lacking.
Methods
Adherence to European Consensus Guidelines for CF was studied by sending surveys to named healthcare professionals in 487 CF centres/units. Data were analysed qualitatively.
Results
Data were obtained from 177 CF clinics, providing care for 21,177 patients (33% response rate). Access to specialist healthcare professionals was good according to 80% of respondents, although only 59% reported access to specialist pharmacists. Of the respondents, 16% reported unlimited access to inpatient CF beds, however 22% reported a lack of availability of immediate care. Most respondents (84%) reviewed their patients quarterly as outpatients. Shared-care models were used by 84% of respondents. Availability and adequacy of funding presented an issue for many, although 8% of respondents indicated that key funding was derived from CF charities.
Conclusions
The respondents demonstrated a high degree of implementation of European Consensus Guidelines. However, areas for improvement include shared care, access to care and funding inequalities.
aRespiratory Medicine Research Group, Centre for Infection an Immunity, Queen's University, Belfast City Hospital, Ground Floor, Lisburn Rd, Belfast, BT9 7AB, UK
bThe Royal Brompton Hospital, Department of Cystic Fibrosis, Sydney Street, London, SW3 6NP, UK
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